Monday, January 2, 2012

A Year of Dawson

I wanted to do a 2nd New Year's entry just for Dawson. He's come so far and had a lot happen in the last year. It's too common for siblings of cancer patients to be lost in the shadow of their sibling and we've been working hard to not let that happen! So here is Dawson's year.
January we got a tip from a lady in our Special Ed support group about constipation. Apparently children with Autism commonly have bowel issues. He was becoming irritable, not eating, etc. After hearing that we got him to the Dr the very next day and discovered that sure enough, his entire bowels were obstructed. So most of the month was concentrated on bowels. Such a fun topic to think about all day. ;)  Thankfully we got him all flushed out and he was a much happier kid!
 In February he got moved to the top bunk. In preparations for Gabriel, Tyler was moved out of his crib and into the bottom. Dawson was excited to sleep on the top.
He was a very busy little guy, it was often hard to get pictures of him!
We went to Mall of America and went on rides. Blues Clues was his favorite show at the time!
He loves cooking with mommy! He's so very cautious about the oven and stove, thankfully! Everytime he saw me in the kitchen he would want to stir and help dump ingredients together. We worked on counting and many things.
 He loved finding small spaces to sit in.
He was in Occupational Therapy and Speech at home, 1 hour a week, split into 2 sessions. It wasn't going very well, he does better being in the clinic setting, but we couldn't go there with all the germs.

Dawson loved our busy weeks. He went to school Mon, Wed, Thurs for a couple hours a day and rode the bus. We went to Special Ed support groups on both Monday and Wednesday evenings, plus ECFE on Thursday evenings. It was a great opportunity to play with other kids and he loved getting out of the house in the winter.

We also started his diagnosis process. First Neurology, genetics testing, Psychology appointment and that finally brought him to a diagnosis of PDD-NOS. Which is the Autism spectrum, they just didn't know where he was on it. There's Aspergers, Autism and unspecified, all which have different levels to them. This is what they wrote up about him at the beginning of the year. The red is my comments now.

Social Interaction:
Does not appear interested in peers   He now loves having kids over!
Inconsistant / does not respond to his name  He always does now!Takes items from adults and peers and does not look at the person  He doesn't as much anymore and he does look at people nowPlays by himself, actively avoids situations
Does not imitate when imitation is desired (he will on his own terms, but not when asked)
Responds negatively or walks away from requests or directives  Doing much betterLimited joint attention in activities
Unusual eye regard  Much better!

Communication:
Does not use words to communicate wants and needs  He uses lots of words now!
May label an item such as car, but not for communicative intent   Much better, he talks about itemsJust started to point to items  He not only points, but he asks for things by name too!
Repeats the words of others on occasion  
Limited amount of social language (hi-bye)  He talks all the time!Limited response to questions, basic wh-questions (who, what, where, why)
Making sounds just for the purpose of making sounds  I haven't noticed this in many months!Does not respond to yes/no questions   He does all the time now

Restricted, Repetitive or Stereotypical (of Autism) Behaviors:
Difficulty with unstructured time - wanders   He does well keeping himself busy nowShort attention span  Still does, but it's better than it was
Throws objects, sometimes for no apparent reason such as anger  I haven't seen that much lately either
Play skills limited to cars, more interested in watching them than driving and playing  He has quite a few things he likes playing with now. He actually never plays with cars anymore!Difficulties with transitions, may be resistive to going with schedule  Does so much better now!Putting items into his mouth such as stickers He still does but not close to the obsessiveness it was before.
An intense preoccupation with electonical toys or devices  He does still prefer his electronic things.
This is why I love blogging! Looking back and seeing all the progress is simply amazing!!

In March he got another little brother! He did much better this time around, having been there before. With Tyler he didn't want to hold the baby or have much to do with him until he was a little more active. He sat right down and accepted holding Gabriel! :)


In April we found out Tyler relapsed and then Dawson's world changed again. His therapies ended, he ended school early. He spent April 24-27th at Grandma's house, then joined us at the hospital on the 28th once we were settled in. He loved being with us!
I had Dawson on the wait list at Children's for therapy, but it was going to be a while, so Dawson spent most of his days with us at the hospital. My cousin Becky came to help with Dawson. I wanted to give him a way to get out of the room without counting on hospital volunteers and other people he didn't know. Someone consistant. So she stayed with us pretty much the whole time, going home some weekends and when we went home. They would play at the RMH in the hospital, the sibling play room and the play room on the cancer floor. It was a huge relief seeing him able to go where he wants and to have fun.

He still loved being in the room with us. He spent lots of time in Tyler's crib watching movies and playing with toys. He was so attached to him and gave lots of hugs.
 He also loved webcam chats with Grandma!

 Chatting with Grandma
 We are part of HopeKids, who provides free events for families going through childhood cancer and other medical things. So we brought Dawson to the races one evening. He loved it!
 He even got to sit in the winning car since the HopeKids car won.
 We got a day pass from the hospital a couple times and went places like the zoo! He loved the fish.
 He also liked the tiger.
In June I took him to another HopeKids event, the movie theater to see Cars 2. Didn't go well at all, the screen/lights overwhelmed him and he couldn't handle it. Didn't even make it through the previews. Some Autistic kids just can't handle movie theaters. I guess he's one of them!

He spent lots of time lounging around the hospital. He loved eating cheese balls, a new favorite.
 At RMH he loved the pool table and spent a lot of time playing with it everyday!
 At the hospital playroom he loved the Pac-man game. He got very good at it, he can beat most adults!

In July he finally got to the top of the list for Speech Therapy at Children's. He went once a week for an hour and all I had to do was drop him off since I was in the building still. He did great there and learned a lot in the short time he was able to go. He went all month, but in August we had to stop Speech since we moved to the other hospital. He worked on things at home and the hospital with me though. He learned how to write his letters and numbers and picked up on it very fast! With the help of Starfall.com he learned his letter sounds and some simple words too, among other things.

July 11th, Dawson turned 4! He's getting so big!
In August when we were home, he got to go inside a B-17 plane. He loved it!
 Got to sit in all the chairs in the plane too.
 Back to the hospital! He loved the playroom and was right at home there.
 Upside down! A new trick he learned this summer and liked showing off.
 He worked on his nursing skills too. He would push the blood pressure machine around and also push the buttons once the nurse got the cuff on Tyler. We tried to include Dawson in as much as possible. The nurses were great about it too.
 Dawson was such a huge support to Tyler, whether it be hugs and kisses, or just someone to run and play with. It was always nice having him around.
 Dawson realized that Gabriel was getting fun too, smiling and being a little more active.
August was a fun month. At RMH we did Bingo and won lots of fun toys. We were in testing phase for Tyler, so we lived at RMH and just had lots of appointments. So in the evenings we got lots of quality family time. He loved this playhouse they had.
 Their bouncy house on Wednesdays was a huge hit.
 The playground is only fun when Tyler is there! Otherwise he wanted nothing to do with it and still doesn't know what to do with himself on a playground without his brother to run around and play with.
 Such a supportive big brother, Dawson often walked right behind Tyler and was very protective, especially during the times where Tyler was more prone to weak muscles and falling down.
 We also got to the county fair, which was a ton of fun!
 Dawson got on the ferris wheel for the first time. I was nervous, but he loved it!
 Playgrounds! We didn't see many of those this year, but we tried to make the most of it while we were home.
 Playing on the computer, one of his favorite pastimes.
 Dawson loved Pet Therapy night at RMH.
 He also loved GoCart evening on Monday nights. They had some toddler vehicles too.
 Got to go back home for a week and he had so much fun. This was their last picture together at home.
 Mommy time is always fun

In September, after 2 months of paperwork, phone calls, emails and setting things up, he finally got to start an Autism Therapy program at the MN Autism Center. The Autism Center also did an evaluation and testing and gave him an official Autism diagnosis. He started the same day Tyler was admitted for Transplant, Sept 6th. He went all day, 8:30 to 4:30, Mon-Fri and he did great. Even the first week I saw changes. It was nice for him to be able to get out of the hospital since it was really becoming stressful for him to be in there for so many months as an active 4 year old. He visited us on weekends and after school.
 Going to school made it even more fun to visit Tyler since he didn't have to spend all day at the hospital.
 Playing at RMH in the leaves. We were having an Autism Center Family Skills session. They came once a week for an hour and I went to meet with them at RMH. We learned what Dawson was doing in school and the ways they do things, so we could do the same things.
 One of the things we often did during Family Skills was bowling.
 October Pictures! I would often visit Dawson in the evenings after Tyler was intubated. It was usually stressful for Dawson to see him like that, so I'd come visit him instead. It was a de-stressor for me and also so much fun for him.
 Dawson was in charge of the elevator buttons. He actually gets upset if someone else pushes them. He knows his way around the hospital and RMH well.
 Playing outside
 In October I had a friend drive Dawson home from the Autism Center. She had a daughter who is Tyler's age and Dawson loved playing with her. We invited her over to RMH a couple times and it was fun to see him interacting with someone.
November 2nd we lost Tyler. Dawson went to school the next day, he didn't understand what death means and had a good last day of school. They packed up all his things and sent them home with him so we didn't have to go get them. Meanwhile we spent the day packing and preparing to leave RMH. We got back that night and Dawson was happy to be home, though confused. We got him set up to go to school 2 weeks after we got home and it was a smooth transition.
 Dawson has been slowly bonding with Gabriel now.
 He also has different coping things, like his sensory container of beans and his little ball pit.
 As Gabriel gets more active, Dawson has been getting more interested in him.
In December the Autism Center got Dawson's home therapy schedule set up and started coming to our place. He comes home from school at 4:30 and then his therapist stays until 6:30pm. Sometimes they come for an 8:30-noon shift too and he gets on the bus at 12:40. He's loving his therapists and has already been doing well with them. He likes playdough, painting and puzzles, among other things.
 Dawson is learning the routine of being at home and is having lots of fun. He does have many difficult moments, but we are taking them one at a time and I think he's been doing well with coping.
 Dawson has some new friends to play with too! We swap babysitting nights with someone from my mom's club and he is always asking if the girls are coming over to play.
We have many things in mind for 2012. Hopefully we will be free of medical issues and be able to have fun and explore what childhood should really be about. I'm especially excited for Dawson as Gabriel is going to be walking soon and before we know it they'll be running around together and having fun. So here's to a new year full of growth, hope and optimism!

2 comments:

Unknown said...
This comment has been removed by the author.
Grandma said...

lol - I left a comment but it wouldn't let me put my name! So it said "Unknown" said ... so I changed my profile and now it will say "Grandma" said :P

So, to repost what I said ...

Its been just wonderful to see how far Dawson has come in the past year! I love hearing him talk and seeing him interact more.